U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON : 

For sale by the Superintendent of Documents, U.S. Government Printing Office

Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800

Fax: (202) 512–2250 Mail: Stop SSOP, Washington, DC 20402–0001

92–727 PDF 2004

THE FUTURE CHALLENGES OF AUTISM: A SURVEY

OF THE ONGOING INITIATIVES IN THE

FEDERAL GOVERNMENT TO ADDRESS THE EPIDEMIC

HEARING

BEFORE THE

SUBCOMMITTEE ON HUMAN RIGHTS AND

WELLNESS

OF THE

COMMITTEE ON

GOVERNMENT REFORM

HOUSE OF REPRESENTATIVES

ONE HUNDRED EIGHTH CONGRESS

FIRST SESSION

NOVEMBER 20, 2003

Serial No. 108–125

Printed for the use of the Committee on Government Reform

(

Available via the World Wide Web: http://www.gpo.gov/congress/house

http://www.house.gov/reform

(II)

COMMITTEE ON GOVERNMENT REFORM

TOM DAVIS, Virginia, Chairman

DAN BURTON, Indiana

CHRISTOPHER SHAYS, Connecticut

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

JOHN L. MICA, Florida

MARK E. SOUDER, Indiana

STEVEN C. LATOURETTE, Ohio

DOUG OSE, California

RON LEWIS, Kentucky

JO ANN DAVIS, Virginia

TODD RUSSELL PLATTS, Pennsylvania

CHRIS CANNON, Utah

ADAM H. PUTNAM, Florida

EDWARD L. SCHROCK, Virginia

JOHN J. DUNCAN, JR., Tennessee

JOHN SULLIVAN, Oklahoma

NATHAN DEAL, Georgia

CANDICE S. MILLER, Michigan

TIM MURPHY, Pennsylvania

MICHAEL R. TURNER, Ohio

JOHN R. CARTER, Texas

WILLIAM J. JANKLOW, South Dakota

MARSHA BLACKBURN, Tennessee

HENRY A. WAXMAN, California

TOM LANTOS, California

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

CAROLYN B. MALONEY, New York

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

DANNY K. DAVIS, Illinois

JOHN F. TIERNEY, Massachusetts

WM. LACY CLAY, Missouri

DIANE E. WATSON, California

STEPHEN F. LYNCH, Massachusetts

CHRIS VAN HOLLEN, Maryland

LINDA T. SANCHEZ, California

C.A. ‘‘DUTCH’’ RUPPERSBERGER, Maryland

ELEANOR HOLMES NORTON, District of

Columbia

JIM COOPER, Tennessee

CHRIS BELL, Texas

———

BERNARD SANDERS, Vermont

(Independent)

PETER SIRH, Staff Director

MELISSA WOJCIAK, Deputy Staff Director

ROB BORDEN, Parliamentarian

TERESA AUSTIN, Chief Clerk

PHILIP M. SCHILIRO, Minority Staff Director

SUBCOMMITTEE ON HUMAN RIGHTS AND WELLNESS

DAN BURTON, Indiana, Chairman

CHRIS CANNON, Utah

CHRISTOPHER SHAYS, Connecticut

ILEANA ROS-LEHTINEN, Florida

DIANE E. WATSON, California

BERNARD SANDERS, Vermont

(Independent)

ELIJAH E. CUMMINGS, Maryland

EX OFFICIO

TOM DAVIS, Virginia HENRY A. WAXMAN, California

MARK WALKER, Chief of Staff

MINDI WALKER, Professional Staff Member

DANIELLE PERRAUT, Clerk

RICHARD BUTCHER, Minority Counsel

(III)

C O N T E N T S

Page

Hearing held on November 20, 2003 ...................................................................... 1

Statement of:

Schwartz, Ilene, Director, Center for Training Personnel to Provide Evidence-Based Educational Services to Students with Autism Spectrum

Disorders, representing U.S. Department of Education Initiatives; Rick

Rollens, co-founder, MIND Institute, University of California Davis;

Dr. Stephen Edelson, director, Edelson Center for Environmental and

Preventative Medicine; and Colleen Pettinati, mother of two autistic

children .......................................................................................................... 26

van Dyck, Dr. Peter, Associate Administrator, Office of Maternal and

Child Health Bureau, Health Resources and Services Administration,

U.S. Department of Health and Human Services ...................................... 8

Letters, statements, etc., submitted for the record by:

Burton, Hon. Dan, a Representative in Congress from the State of Indiana, prepared statement of .......................................................................... 4

Schwartz, Ilene, Director, Center for Training Personnel to Provide Evidence-Based Educational Services to Students with Autism Spectrum

Disorders, representing U.S. Department of Education Initiatives, prepared statement of ........................................................................................ 29

van Dyck, Dr. Peter, Associate Administrator, Office of Maternal and

Child Health Bureau, Health Resources and Services Administration,

prepared statement of ................................................................................... 12

Watson, Hon. Diane E., a Representative in Congress from the State

of California, prepared statement of ........................................................... 50

(1)

THE FUTURE CHALLENGES OF AUTISM: A

SURVEY OF THE ONGOING INITIATIVES IN

THE FEDERAL GOVERNMENT TO ADDRESS

THE EPIDEMIC

THURSDAY, NOVEMBER 20, 2003

HOUSE OF REPRESENTATIVES,

SUBCOMMITTEE ON HUMAN RIGHTS AND WELLNESS,

COMMITTEE ON GOVERNMENT REFORM,

Washington, DC.

The subcommittee met, pursuant to notice, at 2:35 p.m., in room

2154, Rayburn House Office Building, Hon. Dan Burton (chairman

of the subcommittee) presiding.

Present: Representative Burton.

Staff present: Mark Walker, chief of staff; Mindi Walker and

Brian Fauls, professional staff members; Nick Mutton, press secretary; Danielle Perraut, clerk; Richard Butcher, minority counsel;

and Jean Gosa, minority assistant clerk.

Mr. BURTON. Good afternoon. A quorum being present, the Subcommittee on Human Rights and Wellness will come to order.

And I ask unanimous consent that all Members’ and witnesses’

written and opening statements be included in the record. And

without objection, so ordered.

I ask unanimous consent that all articles, exhibits and extraneous or tabular material be included in the record. Without objection, so ordered.

In the event that other Members attend the hearing, I ask unanimous consent that they be permitted to serve as members of the

subcommittee for today’s hearing. Without objection, so ordered.

The subcommittee is convening today to further examine increases in the occurrences of autism in the United States and to

discuss the ways in which the Federal Government is providing

services and financial assistance to autistic individuals and their

families, and to learn more about their plans to deal with this

growing epidemic in the future.

I was very pleased yesterday that we had the first autism conference. A lot of the information that Dr. Weldon and I and others

gave to the conference I hope will be taken to heart by the scientists who are working on this issue. Hopefully we will be able to

get some things accomplished that we have been working on for a

long time.

And I think Secretary Thompson should be congratulated, as

well as the President, for finally beginning to move on this.

2

About 15 years ago, autism was considered a rare disease, affecting about 1 in 10,000 children. Now, it is about 1 in 150 to 200.

It is the third most common developmental disability that children

face, even more prevalent than things such as Down’s Syndrome

and other childhood cancers.

According to a study released earlier this year by the California

Department of Developmental Services, it was reported that the

number of cases of autism in that State more than doubled since

1998 to December 2002. It went from about 10,000 to over 20,000.

This explosive rate in the growth in autism in not merely being observed in California, but throughout the country.

Today it is reported that there is more than 11⁄2 million individuals in this Nation that are afflicted with autism, and that the incident rates of these disorders continue to increase. They estimate

that in the not too distant future we can see 4 million children affected. And the long-term ramifications of that from a cost standpoint is unbelievable, and our taxpayers will have to pay for that.

That is why I initiated an in-depth investigation into the autism

epidemic over 4 years ago when I was chairman of the full committee. That initial investigation led to several committee hearings, bipartisan legislative proposals, and educational congressional briefings on autism for Members and their staffs.

In addition, various Federal agencies in the United States have

also rightfully begun to acknowledge the present and future public

health implications of the autism epidemic, and they are currently

conducting and funding research into the causation and frequency

of these disorders.

In an effort to better coordinate the efforts of the U.S. health

agencies in response to autism, the Children’s Health Act of 2000

established an Interagency Autism Coordinating Committee. The

committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies and to better coordinate their autism-related programs and initiatives.

Today, approximately $10 billion a year is spent on these Federal

projects relating to autism, including research, training for the

teachers of the autistic individuals, and financial assistance to help

families with the great financial burdens associated with caring for

family members afflicted with an autism spectrum disorder.

If the upward trends of autism continue, the budgetary impact

could increase 40 times to over $400 billion per year by the year

2013, and that is something we can’t let happen if it is at all possible.

Today the subcommittee has the privilege of hearing from the

Honorable Peter van Dyck, the Associate Administrator from the

Office of Health Resources and Services Administration at the U.S.

Department of Health and Human Services, who is going to be testifying on the current programs and financial assistance that his

office is providing to help families with autistic individuals.

I would also like to know, Mr. van Dyck, if you need more, how

much more you need in order to do what has to be done, and we

will see if we can’t take your recommendations to the appropriations committee to get the money you need, because we want to

make sure that we get to the bottom of this as quickly as possible.

3

In 2001, President Bush signed or pledged to leave no child behind, promising that every child in American should have the opportunity to receive a first-rate education. In an effort to fulfill his

promise, the U.S. Department of Education is currently testing programs that would help to better train teachers who educate children with autism.

Ms. Ilene Schwartz, Director of the Training Center to Provide

Evidence-based Educational Services to Students with Autism

Spectrum Disorders, is here today to explain these exciting new

educational initiatives.

In addition to these Federal initiatives in response to the autism

epidemic, there are several nongovernmental and private institutions providing treatments that have been shown to improve the

health and well being of autistic children.

Mr. Rick Rollens, co-founder of the MIND Institute at the University of California Davis, and Dr. Stephen Edelson, director of

the Edelson Center for Environmental and Preventative Medicine,

are going to testify before the subcommittee today to explain the

therapies that their institutions have found to be of great usefulness in helping children with autism.

I firmly believe that if we do not take immediate steps to reverse

the ever-increasing trend of growth in autism cases, we are going

to be passing on a tremendous burden of responsibility in caring

and providing for the autistic community to the future generations

of America, and that is simply not acceptable.

It is my sincere hope that the Federal Government and independent researchers will find new and exciting ways to work together to once and for all find the root cause of the autism spectrum disorders, and to prevent this epidemic from harming more

children.

There are two things that we really need to work on, and those

who are here today I know are concerned as well about these

issues. So I would like to mention those to you. We need to make

sure that the program that is supposed to fund special education

for children needs to be fully funded.

Right now we fund it at about 20 percent. We are supposed to

be funding that at the Federal level of 40 percent. So I think we

ought to contact all of our Representatives and Senators and tell

them that needs to be increased, because the schools around this

country, and I have experienced this with my grandson, the schools

around this country are really strapped for cash as far as special

ed teachers are concerned. And so we need to try to get more

money into that fund so that the States, when they get the money,

can filter it down to the local schools and communities, the moneys

that are necessary to do that.

And like a lot of my colleagues, I forgot what my second is, but

I will think of it during the meeting.

[The prepared statement of Hon. Dan Burton follows:]

4

5

6

7

8

Mr. BURTON. With that, Mr. van Dyck, would you rise so we can

swear you in and we will get started? This is a common practice.

[Witness sworn.]

Mr. BURTON. You are recognized, Mr. van Dyck.

STATEMENT OF DR. PETER VAN DYCK, ASSOCIATE ADMINISTRATOR, OFFICE OF MATERNAL AND CHILD HEALTH BUREAU, HEALTH RESOURCES AND SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Dr. VAN DYCK. Thank you, Mr. Chairman. Good afternoon, Mr.

Chairman. I am Dr. Peter van Dyck, HRSA’s Director of Maternal

and Child Health Bureau. Dr. Duke sends her regrets that she was

unable to appear today due to a prior commitment that she made

before receiving your invitation. Thank you for the opportunity to

talk about our programs for persons with autism spectrum disorders.

The Maternal and Child Health Bureau is one of five bureaus

within HRSA, and it is charged with promoting and improving the

health of our Nation’s mothers and children. Our mission today is

to provide national leadership, and to work in partnership with

States, communities, public-private partners, and families to

strengthen the maternal and child health infrastructure, to build

knowledge and human resources in order to assure continued improvement in the health, safety and well being of mothers and children, and this population includes children with special health care

needs, which would include children with autism, pregnant women,

infants, children, adolescents and women of reproductive age. We

also serve fathers as appropriate.

Title V of the Social Security Act authorizes appropriations to

provide and to promote family centered, community-based coordinated care for children with special health care needs, and to facilitate the development of community-based systems of services for

such children and their families.

By statute, in the Maternal and Child Health Services Block

Grant under Title V, 30 percent of the Federal dollars are designated to support programs for children with special health care

needs, including those with autism. All States meet this requirement, and most far exceed the required 30 percent requirement.

Children with special health care needs include all children who

have or are at increased risk for chronic physical, developmental,

behavioral or emotional conditions, and who also require health

and related services of a type or amount beyond that required by

children generally. This also includes children with autism.

Estimates are that about 18 million children in the United States

have these special health needs. HRSA is responsible for developing and implementing a plan to achieve appropriate communitybased service systems for these children with special needs, including those with autism and their families.

This program is developed around six components. In 2003, the

budget for those six components was approximately $22 million,

and I will describe very briefly each of those six components.

The first, we administer a grant program that supports a national network of communities dedicated to developing and improving service integration for young children with special needs. The

9

program also works with the Federal Interagency Coordinating

Council to identify barriers to coordinated service delivery for these

children and to disseminate successful strategies for integrated

services.

One mechanism for dissemination is a demonstration grant program, and we currently have four States receiving grants. We have

a national resource center which addressed these multiple issues

related to interagency collaboration, community recognition, and

interprofessional practice.

The second area is partnerships in all aspects of decisionmaking.

We promote family centered care through collaboration between

families and health professionals and policymakers to improve the

quality of life for these special needs children.

Current grant funding includes support for four family to-family

health information centers, and two national resource centers on

family professional partnerships. The third area is supporting comprehensive health care through the medical home concept. This

program was developed in partnership with the American Academy

of Pediatrics, and that is to improve access to appropriate services

of routine health care and the integration of medical services within the community of services required by these children.

It is a collaborative effort among child health professionals, children with special health care needs, their families, to assure universal access to medical homes as well as support systems for the

providers who serve these children.

Currently we have grants in 15 States for medical homes. We

have a national resource center, and we have funded these to the

tune of about $3.6 million. Now, in 19—in 2004, rather, an additional $1.5 million was planned, of which 300,000 will support a resource center on service delivery issues specific to autism, and that

will be coming out in 2004 as a competitive grant.

No. 4, we support access to adequate sources of insurance and financing for needed services. Increasingly, children with special

health care needs, including those with autism, are receiving their

care in managed care plans. The unique health problems of these

children challenge managed care organizations to provide the full

continuum of medical health and social services within their cost

and utilization constraints.

We seek to address these issues, including the identification of

these children, quality assurance systems, provider networks, and

financing strategies. Currently we fund six States in grants to improve financing in this kind of a situation with managed care, two

national resource centers, and they also provide technical assistance to address these unique issues.

No. 5, we seek to provide early and continuous screening identification and early intervention. Infants and children with these

high risk conditions must be identified early in order to help assure

that they and their families receive care and assistance to prevent

future morbidity and to promote optimum development.

Advances in brain research, the Human Genome Project, and increased effectiveness of early intervention have expanded our capacity to identify children with special needs and to offer early

intervention. We have current funding of $10 million, which includes grants to almost all States to receive or to achieve universal

10

newborn hearing screening, and assure linkage to a medical home

early intervention and family to-family support.

And, six, we look to assure successful transitions of children to

all aspects of adulthood. Health care services must not only be delivered in a family centered manner, but they must prepare individuals to take charge of their own health care and lead a productive life.

We currently have grants in five States and a national resource

center and provide technical assistance to address these special

issues.

All State Title V programs funded by us at the Federal level receive funding from HRSA and the Maternal and Child Health Bureau to address these six components. Now, we also have a few

other areas where we are providing specific assistance.

HRSA serves on the Interagency Autism Coordinating Committee, which you mentioned earlier, which meets on a semiannual

basis to enhance coordination and effectiveness of autism research

and service activities across the Federal Government.

As part of the national training curriculum on medical homes,

the National Center for Medical Home Initiatives has recently completed a specific module to provide early developmental and behavioral screening, and this center receives nearly a million dollars annually to support universal implementation of the medical home

concept for children with special health care needs.

Last year we awarded a million dollar grant to Geisinger Health

System in Danville, PA, and this is to develop a medical home

model of care and related set of tools that will be used to improve

early detection, access to diagnostic and evaluation services, and

continuity and appropriateness for care for individuals, specifically

with autism and their families.

Educational tools from this grant will be disseminated to State

programs and communities to strengthen and expand integrated

community services of care for children with autism. We recently,

recently being October of this year, hosted an expert work group

meeting for families of children with autism, and the primary goal

of this workshop was to provide us with information on service

needs from the family’s perspective and to discuss with families potential strategies to address the identified needs.

This information will be shared at the next meeting of the Interagency Coordinating Committee, and we have two long-standing

programs that are relevant to the training of health professionals

to serve persons with autism and other developmental disabilities.

The Leadership Education and Neurodevelopmental Disabilities

Program [LEND], funds 35 programs in universities across the

United States to train individuals from a wide variety of professional disciplines to assume leadership roles and to ensure high

levels of clinical competence to improve the health of children who

have developmental, neurodevelopmental or other related disabilities such as autism and mental retardation.

The interdisciplinary faculty and trainees include audiologists,

dentists, health administrators, nurses, nutritionists, OTs, PTs,

physicians, psychologists, social workers, special education professionals and speech and language pathologists. These programs are

currently funded at $18 million a year, and we also fund nine perVerDate 11-MAY-2000 10:33 Apr 06, 2004 Jkt 000000 PO 00000 Frm 00014 Fmt 6633 Sfmt 6633 D:\DOCS\92727.TXT HGOVREF1 PsN: HGOVREF1
11

haps in universities of higher education to enhance the behavioral,

psychosocial and developmental aspects of general pediatric care,

and these programs support fellows in behavioral pediatrics to help

in their development for leadership roles as teachers, researchers

and clinicians. And clearly this will aid in the identification and

treatment of children with autism.

We also funded a study addressing autism entitled ‘‘The Early

Detection of Autism: Comparison of Three Screening Instruments,’’

where we are comparing the efficacy of three different screening instruments to identify children as early as possible, children and infants as early as possible, for signs of autism.

And we have the health centers, community health centers program. Once a child as a primary care patient presents suspected

symptoms of autism, primary care clinicians seek a specific referral, generally outside the purview of the health center, but within

the community that health center serves.

The primary care clinician may tap any available resource, such

as a community mental health center or other federally funded program, such as the Children With Special Health Care Needs Program which I mentioned earlier.

Well, this provides a brief summary of HRSA’s activities to provide assistance to persons with autism. We call upon our partners,

all of us together, to have a common effort to develop and improve

community-based systems of care for children with special health

care needs and their families.

It will take joint efforts of all partners to make a difference for

these children and these families.

Thank you very much for the opportunity to appear before the

committee.

[The prepared statement of Dr. van Dyck follows:]

12

13

14

15

16

17

18

19

20

21

22

Mr. BURTON. Thank you, Dr. van Dyck. The two areas I was

talking about before I had a brain lapse was the IDEA program,

so that we get adequate funding to help these children with special

education needs, and the second was a Vaccine Injury Compensation Fund, which needs to be revised.

That is going to be done legislatively, but it would help a great

deal if we can get our health agencies to get behind that effort. One

of the problems that we have with the Vaccine Injury Compensation Fund is it was supposed to be nonadversarial, and I know you

can’t do anything about this but I would like for you to carry this

back to our health care agencies, because Henry Waxman, who was

my ranking Democrat on my committee when I was chairman, he

and I sponsored a bill that would have made it easier for parents

to have access to that fund who have had damaged children.

And while it is nice that we have your agencies working together

to help assist these families, the cost is huge. We have had people

lose their homes, mortgage everything they have, the mental anguish that they go through trying to take care of their kids and

worry about them for the future, because we are going to grow old

and die, and these kids are going to live to a normal age in most

cases. And they are worried about what is going to happen to them

if they haven’t had proper training.

So we need to make sure that the parents of these children and

the kids themselves have access to the Vaccine Injury Compensation Fund. It has over $3 billion in it now, and they are paying virtually no claims. We have said to the pharmaceutical industry that

is very concerned about class action liability suits that we would

consider holding them harmless if they would put more money into

the fund to make sure these parents and these children were taken

care of, and if the fund started to be depleted there could be an excess charge for each shot added to the shot, to make sure that

those people are taken care of, because children who are damaged,

we believe many of them have been damaged by things such as the

mercury in vaccines, that they should be compensated and taken

care of.

So I hope you will take that back. Ask them to, the leaders of

the health agency over there, to assist Henry Waxman and myself

to get that legislation passed so that we can help these families

who are really suffering right now.

Dr. VAN DYCK. I will relay that.

Mr. BURTON. Thank you very much. And also the IDEA program,

we need to get more money into that. I will do my part here at the

Capitol.

Now, you said that the Health Resources and Services Administration ensures access to comprehensive health care through the

Medical Home Program. Can you tell me what parents should do,

what they should do to try to have access to that, and what the—

because a lot of those people, they look at the bureaucracy and say,

what the heck do I have to do to get these kind of benefits? They

don’t know. So can you give us a rundown on what the benefits are

and what can be done to make sure that people have access to

them.

And, also, just throw in one more thing, if you are getting adequate funds to fund these programs.

23

Dr. VAN DYCK. The Title V block grant program provides funds

to all States by a formula. The Title V Children with Special Care

Needs program, through the Title V block grant, provides funds to

every State health department to, among other things, provide care

for children with special health care needs.

Mr. BURTON. So they would apply through the State health department?

Dr. VAN DYCK. So a family would either call their local health department, their local public health nurse, the State health department, the State maternal and child agency, and that agency would

put them in touch immediately with the appropriate program.

Many States contract with locals, local health departments as

well. Many States have clinics in local health departments for

these children, early identification types of clinics. So that would

be the best place for families to call.

We help financially those who are poorest, but we often coordinate the care through the medical home concept, where we try to

provide referral, comprehensive care, competent care, culturally

competent care, coordinated care for families. Even thought we

may not be able to help them pay for this specific health care, we

may be able to help them find their way through the morass of

services that are so necessary.

Mr. BURTON. How much money is appropriated to block grants

to the States for this?

Dr. VAN DYCK. The block grant to States program is at $730 million. States must match the money 3 State dollars for every 4 Federal, and most States actually provide more than that. Of the

money going to States almost—when it is combined with the State

dollars, almost half of it is for children with special health care

needs. They feel that is such an important area.

Mr. BURTON. Do you have this information posted on your Internet Web sites?

Dr. VAN DYCK. Yes, we do.

Mr. BURTON. I wish that we could get it out to these various parent groups that have autistic children and children with special

needs, because a lot of people have contacted us, and they don’t

know where to turn.

Now, in Indiana we went to the State legislature, and we were

able to, on a limited basis, we would like for it to be broader, but

on a limited basis get the Medicaid program to take care of children with autism, because before that it wasn’t considered a health

issue, it was considered a mental issue, and it wasn’t covered

under Medicaid. We have gotten that changed in Indiana to a degree.

But I think additional funding is probably going to be needed,

and I don’t know that the States can handle all of that themselves.

So one of things we might take a look at is through our health

agencies here in Washington increasing the appropriation for block

grants so there can be more money.

Dr. VAN DYCK. You mentioned IDEA earlier, getting children into

the early intervention system through the education process. Kids

zero through 3 in many States are served through our State Title

V or MCH block grant. But it is a partnership, education providing

24

many of the educational services or educational-related services,

but not often a whole range of health-related services.

And so it really requires a partnership between IDEA agencies

at the State level and the maternal or child health or State health

agency at the local or State level to really develop a full-fledged

program for these children.

Mr. BURTON. I understand that. The problem in both areas are

resources. And since I have been involved in this personally, my

daughter at her school, my grandson was having trouble with

speech and some other problems. And so the doctor that reviewed

my grandson’s case said, well, he needs 3 days a week of speech

therapy.

Well, we said 2 days would be enough. They said they would give

him half a day, which was totally inadequate and he would fall further and further and further behind. So more money needs to be

used for that. And the States are pretty strapped right now like the

Federal Government. We need to take a hard look at how we are

allocating resources now.

HHS gets billions and billions of dollars. I don’t know how much.

Does anybody know how much they get a year? But it is a lot. I

just wish whoever is in the appropriating process over there at that

agency, after you get the appropriation from Congress, would take

a hard look at the developmental disorders, including autism, that

these kids are having to go through and see if we can’t increase

that block money that is going to the States to help with that.

And then the IDEA program we will have to take care of here

through direct appropriations. Let’s see what else I have here.

Now, the Federal Government grants funds to the State health

agencies to disburse Medicaid waivers and autism waivers. Is your

agency charged with managing those funds?

Dr. VAN DYCK. No, sir.

Mr. BURTON. You are not. Well, you say on your Web site that—

for these grants and these benefits that your Web site will—you

tell them where to go.

Dr. VAN DYCK. The HRSA Web site, which is www.hrsa.gov, can

point to the MCH, Maternal and Child Health Bureau Web site, or

www.mchb.hrsa.gov will get the Maternal and Child Health Web

site. For example, I can look up that Web site and see that Indiana

receives about $12 million for the block grant, puts in another $13

million of State money, for a total of about $25 million for maternal

and child health services, spending about half of that on children

with special health care needs. And there will be the person to call

in Indiana who would help know about the program, where parents

could call and sign up. So that person’s name would be on the Web

site.

Mr. BURTON. But nationwide, how much money do you say that

they are block granting out?

Dr. VAN DYCK. Nationwide, the maternal and child health block

grant is $730 million. About $600 million of that goes to the States,

divided among them.

Mr. BURTON. So the States, they have to match that with about what, $700 or $800 million?

Dr. VAN DYCK. They have to match 3 State for every 4 Federal.

So for $600 million they would have to match about $450 million.

25

Mr. BURTON. So we would be up about a billion.

Dr. VAN DYCK. But they overmatch that. This total program rep- resents about $4 billion of services when the State money is added

in.

Mr. BURTON. That is—with all of the problems there are, that is

still——

Dr. VAN DYCK. That is quite wonderful.

Mr. BURTON. Is it adequate to handle the needs?

Dr. VAN DYCK. I would hate to sit before you with increasing

needs and State budgets declining that we don’t feel an increased

pressure of services, for service provision, from our Federal dollars.

Mr. BURTON. Could you do me a favor and provide for the subcommittee any information that your agency has on their cost projections? Because although that is taken out of HHS money, you

know, if we know here in the Congress what the projected need is

going to be we can talk to the HHS leaders as well as the members

of the Appropriations Committee here in Congress to see if we can’t

make sure there is not a shortfall.

Because these parents, especially parents of autistic kids are

really taking it in the head when they talk about medical expenses,

expenses that—all kinds of expenses that they have to incur to deal

with these kids.

People who haven’t received the grants, how do you help them

have access and get those grants?

Dr. VAN DYCK. HRSA publishes each year a document called the

Preview. It is already published. It is on HRSA’s Web site, and it

lists every grant competition coming up for this fiscal year.

Mr. BURTON. What I would like to do, can we tap into their Web

site and put it into our Web site so people who want to contact—

I would like to do that. I would like to cross-pollinate our Web sites

so that people who are—they know that I am very interested in the

autism issue, so that they can get ahold of my Web site and access

this information. Did we get that Web site address again?

Dr. VAN DYCK. Www.hrsa.gov. HRSA is one of the few agencies

that publishes for the entire year the full compliment of grant competitions for that year.

Mr. BURTON. So OK. So we can get that on there and interested

parties can find it, not only from your Web site but from ours as

well.

Mr. BURTON. Dr. van Dyck, I appreciate you very much coming.

I hope when you go back to the health agencies you will tell the

people over at HHS I am not the SOB that everybody thinks that

I am all of the time, just once in a while.

Dr. VAN DYCK. I would never say that, sir.

Mr. BURTON. I know you wouldn’t say that, but I know that a

lot of those people over there are very concerned. In fact, some people told me that they don’t like to come before our committee because we are very difficult to deal with. All I can say is that if we

are, it is only because there is a great deal of concern about these

kids. And when you talk to parents, and my grandchild is doing

better. But when you talk to parents who have kids who are 14

years old, who attack them, and they have to lock the door between

the child and them, so that they don’t get hurt, and the house is

being destroyed, they are running out of money, they don’t have

26

money for expenses let alone taking care of the child and food on

the table, and they wonder what in the hell is going to happen to

my child in the next 4 or 5 years, it is really tragic.

And it is not that our health agencies don’t have a heart, I think

that they do. But I think that there needs to be a realization that

we have to look very hard at what the needs are and provide for

those. And I think we have been falling short a little bit there. And

that is why I would like to work with you at the health agencies

to find out what needs to be done, and what we need to do in Congress to get it done.

And if the health agencies need to reevaluate how much money

they are putting into, say, you know, developmental disorders in

general, autism in particular, maybe we can talk to them and work

with them to get more money put into that so parents can deal

with that better.

Dr. VAN DYCK. Thank you very much. We look forward to working with you. I should say that the families and children with special health care needs in the country are lucky to have such a committed person advocating for them.

Mr. BURTON. Well, I wish you would call my kids and tell them

that, because they don’t appreciate me all that much. Thank you

very much. I appreciate that very much.

Our next panel is my good friend, Mr. Rick Rollens, co-founder

of the MIND Institute at the University of California Davis, and

Dr. Steven Edelson, who is the director of the Edelson Center for

Environmental and Preventative Medicine, and Ms. Colleen

Pettinati. She is the mother of two autistic children.

Would you all come forward and we will get you sworn in and

get started on this.

[Witnesses sworn.]

Mr. BURTON. Let’s start with you, Ms. Schwartz. And if you

could, we are going to have more votes on the floor, if you can try

to confine your comments to about 5 minutes, we would appreciate

that.

STATEMENTS OF ILENE SCHWARTZ, DIRECTOR, CENTER FOR

TRAINING PERSONNEL TO PROVIDE EVIDENCE-BASED EDUCATIONAL SERVICES TO STUDENTS WITH AUTISM SPECTRUM DISORDERS, REPRESENTING U.S. DEPARTMENT OF

EDUCATION INITIATIVES; RICK ROLLENS, CO-FOUNDER,

MIND INSTITUTE, UNIVERSITY OF CALIFORNIA DAVIS; DR.

STEPHEN EDELSON, DIRECTOR, EDELSON CENTER FOR ENVIRONMENTAL AND PREVENTATIVE MEDICINE; AND COLLEEN PETTINATI, MOTHER OF TWO AUTISTIC CHILDREN

Ms. SCHWARTZ. Absolutely. Good afternoon, Mr. Chairman, and

thank you for inviting me to come talk to you. I am a professor of

education at the University of Washington in Seattle. At the University of Washington I prepare professionals to work with very

young children with disabilities, including children with autism. I

am also a faculty advisor to the Experimental Education Unit, a

comprehensive early childhood program for children with and without disabilities at the University of Washington.

In addition, and the reason I was invited here this afternoon, I

am the principal investigator of OSEP-funded projects that are tarVerDate 11-MAY-2000 10:33 Apr 06, 2004 Jkt 000000 PO 00000 Frm 00030 Fmt 6633 Sfmt 6633 D:\DOCS\92727.TXT HGOVREF1 PsN: HGOVREF1
27

geted toward developing, evaluating, and disseminating evidencebased strategies for educating children with autism.

I would like to tell you about two of these projects. First, Project

DATA is a school-based preschool program for children with autism

and their families. Due to our OSEP grant, these services are provided to children and families at no cost to parents.

Initially funded by OSEP in 1997, this program is now supported

by local public schools and private donations. Children who participate in our program have all made tremendous gains across all developmental domains. Our first sample of toddlers, children who

started our program under the age of 2, are wonderful examples.

After 1 year of intervention, 6 of the 8 children tested in the normal range of development across all domains. At this point, 48 children have completed our program, and 58 percent of these children

leave our program and enter inclusive elementary school programs.

The families who participate in our program are among our strongest and loudest advocates. Parents are pleased and school districts

are pleased.

We have over 100 visitors to the program every year. We have

trained early childhood providers, teachers and family members

across our State and over 20 other States. Although we are proud

of these outcomes, we are concerned when we look at what happens

to children when they leave our program and make the transition

to elementary school. Although, as I said, 58 percent of our graduates enter inclusive classrooms only 4 years later, only 25 percent

of our graduates are still attending elementary school next to their

typically developing peers. Most of these children are not successful

in general education classrooms, not because of their academic behaviors. Many of these children who are not successful have reading and math skills at or above grade level. Although these children have achieved standards academically, they are suffering behaviorally and socially.

Many of these children do not have friends, rarely make initiations to peers, and often do not respond to the initiations by their

peers. Occasionally these children demonstrate behaviors that their

teachers consider challenging, but rarely are the appropriate levels

of support in place for them.

Although we know quite a bit about what constitutes a high

quality effective preschool program for children with autism, we

know relatively little about what services should look like for these

children as they get older. The challenges of elementary school,

middle school and high school and adult life must by addressed by

evidence-based instructional programs.

Research is needed to determine what elements must be contained in these programs. Although we know quite a bit about effective programming for children with autism, there is still a huge

gap between what is state-of-the-art and what is state of practice;

that is, what most children and families face when they enroll their

child with autism in their local school district.

To attempt to address this inequity, the Department of Education funded a national training center, which was awarded to the

University of Washington. Our center, the Professional Development in Autism Center, has partners across the country at five

partner sites. At this point we have been in existence for 10

28

months and we have already provided training to 47 educational

teams from 14 States.

In summary, over 500 teachers, parents, and other interested

providers have participated in our activities. To give you an idea

of what those activities are like I will tell you in this training we

provide to educational teams is individualized, intensive and

hands-on. What we know about training educators is somewhat

similar to teaching children. We cannot just lecture on best practice

and expect people to go home and change their behavior.

Teachers need to see best practice in action, practice implementing these strategies with support, and they need followup support

and consultation. For example, this week a team of educators from

Mew Mexico are at the University of Washington for training.

From before their visit, an educator from the University of Washington visited them in their classrooms to help begin the training

process with a needs assessment.

This week the staff from New Mexico will spend 40 hours with

the trainers at the Experimental Education Unit. Part of this time

will be lecture, part observing children in a model program, part

will be working with children directly with close supervision, and

part discussing what they are learning and how they will be able

to apply it in their own setting.

Then, sometime in January the staff member from UW will travel to New Mexico again, to help the team with implementation

issues and conduct a post-assessment to evaluate the effect of the

training. The team members will have access to a problem-solving

Web site and phone calls with the training team. All of these services are paid for by the OSEP training center.

You might ask why this level of training and support is necessary. First, as you know, children with autism present a great

challenge for public schools. Given their triad of disabilities in communication, social interaction and a restricted or repetitive set of

behaviors, children with autism present a diverse profile of abilities

that range from children who read well above their grade level to

those who are nonverbal.

Next, the environments in many elementary schools and the curriculum used in these settings are not well suited to the needs of

children with autism.

Finally, if we are ever going to achieve the dream of leaving no

child behind, we need to ensure that all children with autism have

access to free, appropriate public education that utilizes evidencebased instructional strategies. These strategies are complex to use

and costly to implement. To respond adequately to the autism epidemic, we need to make access to high quality services for those

children already identified simple and seamless.

High quality training for educational professionals is an important first step. Thank you.

[The prepared statement of Ms. Schwartz follows:]

29

30

31

32

33

34

35

36

Mr. BURTON. Thank you, Ms. Schwartz. I will have some questions for you on cost and other things in a moment.

Dr. Edelson.

Dr. EDELSON. Good afternoon, ladies and gentlemen of the Committee on Human Rights and Wellness. My name is Stephen

Edelson. I want to thank Congressman Dan Burton and Mindi

Walker for making this happen. It is quite an honor to be asked

to enlighten this esteemed group about my work over the last 9

years dealing with the biology of the autistic spectrum of disorders

and its clinical management.

My training in environmental medicine has allowed me to study

the molecular basis of disease, including applied immunology and

toxicology, clinical biochemistry and free radical medicine. These

disciplines are key to understanding and unraveling the biology

and the basis for the ASD.

During the last decade, there has been a steady increase in the

incidence of these developmentally delayed syndromes called the

autistic spectrum.

The numbers have gone from 1 in 10,000 to approximately 1 in

250, and this may be underreported. During the same decade, I

began to search for the biological aberration that has led to this occurrence. I developed an interest in 1994, after hearing a thought

from someone in the autistic community, ‘‘all autistics have food allergies.’’

Being environmentally trained, my mind wondered about how

this epidemic could have begun. And in these cases the brain and

the immune system seemed to be involved. And how could that be

affected 100 percent of the time?

There it is. Only one reason could relate to this, a toxic injury

of some sort. I began the investigation to find common threads of

the autistic spectrum in 1994 with the study of 30 children in the

Atlanta area. The findings in this group manifested combinations

of abnormal processes that were found in 100 percent of the children and many other findings of abnormal function in between 25

and 75 percent of the group.

The three most common characteristics, and found as the roots

of the spectrum, were a genetic abnormality and liver detoxification, heavy metal burdens with lead, tin, nickel and mercury, and

toxic chemical burdens with pesticides and petrochemicals.

In addition, the following were also pieces of the puzzle; 70 percent of the children maldigested; 30 to 40 percent had malabsorption syndrome; 50 percent of the children had an autoimmune

encephalopathy, their immune systems were attacking their brains;

100 percent had food allergies and activated immune systems; 75

percent had damaged intestional linkages called a leaky gut; 100

percent of the children had significant nutritional deficiencies, and

approximately 65 percent had massive free radical stress, which is

oxidative injury.

Although this studying of these children was done without agedmatched controls, the numbers of children, approximately 150, and

the laboratory’s reference ranges allow us to speculate that these

are the roots of the autistic spectrum. And we leave it to the researchers at the universities to do more detailed scientific work to

prove the hypothesis.

37

I am a clinician, not a researcher. I take care of autistic children

and get them well. It is of great importance to mention that not

only do we have the large numbers and the reference ranges, but

we have shown over the years that by reversing the abnormal biology of these children, they improve dramatically, between 60 and

100 percent, depending on the age when the treatment is begun,

the aggressiveness of the therapy and the commitment of the parents to doing the work necessary.

The therapies that I am talking about include heavy metal detoxification using chelation, chemical detoxification using sonar

depuration therapy, nutritional therapies, dietary therapies, and at

times gamma globulin therapies.

Over the last 9 years, we have published several studies in peer

review journals, lectured about the subject in several organizations,

and in April 2003 released my book, Conquering Autism, to the

public. The message of my 9-year journey in developing theories

and innovative therapies for this illness are all contained in these

pages.

I am hoping that the message I have offered to the public and

now to our government will open the eyes to the real culprit in this

illness, the poisoning of the world, and so affecting first the must

vulnerable of humans, the fetus and the newborn. We all know

that this illness is costing our economy billions, and ruining the

lives of families and preventing the maturing of a segment of our

population.

There is a light at the of the tunnel, and I have made it possible

for parents to attain great changes in the lives of their autistic children. We need this type of innovative work to be available to the

masses that currently either don’t know it exists or cannot afford

to do the work needed to help their children get well.

We ask of this fine body of lawmakers to allow this nontraditional science to be available to all that would like to use it. It is

up to all of us to do everything possible to improve the functional

life of all of our children.

Mr. BURTON. Thank you.

Ms. Pettinati.

Ms. PETTINATI. Good afternoon, ladies and gentleman of the committee. My name is Colleen Pettinati. I would first like to say what

an honor and privilege it is to be here.

I have two beautiful children, Michaela, age 9, and Jonathan, 7

years old. Both of them have been diagnosed with pervasive developmental disorder, also known as autism.

At 2 months old, Michaela experienced collapse shocked after receiving six immunization shots in the same day. It was a frightening experience, one I really didn’t understand at the time. When

I brought her back to the pediatrician, he assured me that she was

fine. At least she appeared that way when he saw her. From that

point on, she never seemed to hit her milestones. Her doctor was

not really concerned.

By the time Michaela was 2 years old, I realized she was not

well. She had severe behavioral problems, night terrors, extreme

anxiety, echolalia and no sense of danger. She was also suffering

physically with chronic ear infections, continual explosive diarrhea

38

and feveral seizures. In my opinion, this is a little extreme for the

terrible twos.

I then began my journey through the band-aid approach of mainstream medicine. After receiving the long-overdue diagnosis of autism, it was recommended that Michaela should be put on Prozac,

and when my son was diagnosed at 23 months, it was recommended that he should be on Ritalin.

Instinctively, I knew this was not the answer, so I dug my heels

in and started my search for answers. I attended conferences and

read books on the biomedical approach to autism. This made sense

to me.

Finally, my research led me to Dr. Edelson of Atlanta, GA. By

this time Michaela was 6 and Jonathan was 4. He addressed all

the areas which I knew in my heart were influencing my children’s

poor health and delayed development. Of course, none of tests or

treatments were covered by insurance because they are not used by

mainstream medicine.

It took my husband and I 2 years to figure out a way to get the

money to treat our children. This was the most difficult 2 years of

our lives, knowing that there were treatments out there that could

help make our children healthier and we could not afford them.

We had no choice but to ultimately sell our home in Massachusetts, leave our family and friends behind and everything familiar

to our children and move to Atlanta. We knew we had to use the

equity from the sale of our home to try to save our children from

this devastating disorder.

The tests revealed exactly what I had suspected and then some.

My children were suffering from heavy metal toxicity, immune dysfunction, abnormal liver detoxification, malabsorption, leaky gut,

nutritional deficiencies, multiple food allergies and chemical sensitivities. Worst of all, they have antibodies against their brains.

After 4 months—I am happy to say that after 4 intensive months

of therapy at the Edelson Center, my son has improved dramatically. His expressive and receptive language has blossomed. His

eye contact has improved. His physical health is much better as

well. Jonathan is socially interacting with his peers and keeping up

academically. He is in a typical first grader, with the help of an

aide.

My daughter Michaela’s improvements have been more subtle.

She requires more treatment.

Our insurance company has paid very little, approximately

$3,000 to date. We still cannot afford all the treatments necessary

to save our children.

To date, my husband and I have spent $50,000 in cash and have

taken out a $30,000 home equity loan that is dwindling away. We

both work full time and have no family nearby to help us take care

of our children. We bet everything we had on a nontraditional

treatment because there was no hope for our autistic children in

the world of mainstream medicine.

I strongly believe that Dr. Edelson’s treatment protocol should

become mainstream so every autistic child has a fair chance of recovery and the financial burden should not be put on the parents.

In conclusion, the toll of autism socially, mentally, emotionally,

physically and financially is enormous. The lack of knowledge surVerDate 11-MAY-2000 10:33 Apr 06, 2004 Jkt 000000 PO 00000 Frm 00042 Fmt 6633 Sfmt 6633 D:\DOCS\92727.TXT HGOVREF1 PsN: HGOVREF1
39

rounding this disorder increases our burden to an almost intolerable level, but we know we must go on and save our children.

Mr. BURTON. Your situation with the six shots in 1 day with your

daughter sounds a great deal like my grandson. He received nine

shots, seven of which did contain mercury, and it was dramatic.

How quickly after she received those shots did you notice a change?

Ms. PETTINATI. It was like 4 hours later.

Mr. BURTON. It was very close.

Ms. PETTINATI. She went into collapse shock. When I brought her

back to the pediatrician, he said, oh, she is fine. There is nothing

wrong with her. I didn’t put two and two together until probably

4 years ago. I read a book that explains exactly what she went

through. It was collapse shock.

Mr. BURTON. Did you get a chance to check to see what was in

those vaccines? Was it thimerosal in there?

Ms. PETTINATI. Absolutely.

Mr. BURTON. Do you know how many of the six shots contained

thimerosal?

Ms. PETTINATI. You know, I really can’t tell you offhand.

Mr. BURTON. You probably couldn’t find that if you went back.

Ms. PETTINATI. DPT, they have hepatitis B. I know those—at

least those three do contain it, and that is what she received that

day.

Mr. BURTON. Have you applied to the Vaccine Injury Compensation Fund?

Ms. PETTINATI. I haven’t applied to the fund.

Mr. BURTON. You probably have missed the window. We are trying to get that changed so there will be a look-back provision. The

problem is not in the House. It is in the Senate. We are trying to

get them to go along with the legislation that Congressman Waxman and I sponsored which would give you people about 18 months

to 2 years to file and would have about a 6-year look-back provision

in it so people who have had damaged children can get into the

program and at least make the application. So we are going to

work on that.

You said you’re training, Ms. Schwartz, you are training educators from around the country. How is that funded?

Ms. SCHWARTZ. It is funded through the OCEF training grant.

Mr. BURTON. Is there adequate funds there for that training?

Ms. SCHWARTZ. Well, we could always do more training. I think

that, clearly, we have very generous grant, $1 million a year for 5

years.

Mr. BURTON. That is coming from?

Ms. SCHWARTZ. OCEF. But there are a lot of school districts in

this country, and one of the problems that we have is that we are

really—it is really a drop in the bucket to the amount of training

and technical assistance that needs to be provided.

One of the issues about providing intervention to children with

autism—and they talked about this at the autism summit yesterday and today and we all know this—is the children are so diverse

in that their behavioral profiles are so different. So teachers need

some ongoing support and consultation on how to help particular

individual children. That kind of supervision and training is costly.

40

Mr. BURTON. You get into how the teachers can deal with the behavioral problems as well?

Ms. SCHWARTZ. Absolutely. That is an important part of our

training. In addition to making sure that they have evidence-based

strategies to teach new skills, at the same time they need to use

positive behavior support strategies to make sure that appropriate

behavior is being reinforced and not inappropriate behavior.

Mr. BURTON. There have been cases where children who were autistic who were making progress as far as their education have

been expelled from school because the teachers can’t cope with

them. I am sympathetic to the teachers. It is hard to deal in this

day and age with children who don’t have any disabilities, let alone

children who are suffering from things like autism.

So what we are going to try to do is find out how much funding

your training program needs that you are not receiving. I wish you

would give us that information and then find out through the IDEA

program how much more money we can get for that from the Federal level so that the States will have more money to deal with it.

But I am still concerned about how you are going to deal with

those behavioral problems.

My grandson is doing a lot better, and I am looking at it from

him because I have seen this firsthand. He is doing better. But

there was a time when he was flapping his arms, running around,

banging his head and hollering at inopportune times. It is hard for

a teacher to cope with that.

How do other teachers deal with it? How do you tell teachers to

deal with that sort of thing?

Ms. SCHWARTZ. Well, first of all, thank you for your support, but

there is a strategy, a way of dealing with challenge behavior that

we call positive behavior support. One of the things we know about

challenging behavior now, whether it is flapping your hands or hitting someone else, is that those behaviors serve a function, and we

need to know what the function is.

For some children the function is saying, hey, I need attention.

For other children, it is escape, saying this is too hard or I don’t

want to do any more of this. For some children, it’s sensory. For

example, the lights in here bother me, or it is too loud.

One of the things we need to do is identify what that function

is, because we can then help the child achieve that function in a

more appropriate way.

Mr. BURTON. How in the world do you teach a teacher all those

things so they know how to recognize it?

Ms. SCHWARTZ. That is one of the things we very much are struggling with, is the idea that school districts really need to have

someone on staff, given the incidence of autism now, who is more

trained than the average teacher. Because the reality is we are

never going to get the average teacher up to that level of training.

But there are strategies that can be implemented in the classroom

that are not that difficult if you have frequent, ongoing support

from a mentor or a coach to implement those strategies.

Mr. BURTON. What I would like for you to do, if you could give

us in writing your recommendations, maybe we could submit those.

We have the gentleman from our health agency who is here, Dr.

van Dyck. If we could get those recommendations, maybe through

41

Dr. van Dyck or other people at the health agencies, we could pass

those on and add that to the mix as far as maybe getting additional

funding to deal with this problem.

There are so many school districts and so many kids who are suffering from these development difficulties orders, autism and others, that we really need to have more education on how to cope

with them.

Ms. SCHWARTZ. Absolutely.

Mr. BURTON. If you can get that information to us, we will get

it to Dr. van Dyck and have it passed on to some of others over

there.

Ms. SCHWARTZ. Absolutely.

Mr. BURTON. Are you familiar with that at all, Dr. van Dyck?

Dr. VAN DYCK. Yes.

Mr. BURTON. Are health agencies already working on that to a

degree, how to teach teachers to deal with and cope with these

kids?

Dr. VAN DYCK. Well, I think we leave the teaching of the teachers

to the education agency, but, again, it is this partnership between—it is an important partnership between teachers and the

health professionals, because they help interpret this.

Mr. BURTON. If we can get this information, we will pass it on

to Dr. van Dyck and others over there and it will be included in

part of the mix.

Dr. Edelson, you said you review the abnormal biology; and after

you do that, you use procedures that are not recognized by the conventional or regular medical profession. You use such things as

chelation. How do you check out the normal biology or the abnormal biology of the child?

Dr. EDELSON. First, let’s talk about heavy metals like mercury,

lead, nickel, etc. We use what we call a challenge, where we put

chelators into the child, depending on the weight of the child.

Mr. BURTON. You do that through the bloodstream?

Dr. EDELSON. Yes, we do that IV. We give an IV. Then we measure the urine output over 12 to 24 hours.

Mr. BURTON. Checking for mercury, as well as other heavy metals?

Dr. EDELSON. Oh, yes, we check out all the heavy metals. We

send that to a reputable laboratory that does the work, measuring

micrograms per liter of metal that comes out.

Usually, before we even do the challenge, we do a 24-hour urine

without any challenge to see if anything is coming out or anything

is present without the actual chelator, so you can compare what it

is like before and after a challenge. And you see a big spike—if the

heavy metals are coming out, you see a big spike after the challenge is given. That way you determine the total burden of heavy

metals in the child, and then you set up a program that the child

gets weekly treatments of chelators to remove these metals from

their body.

Mr. BURTON. Well, I think you all were at the conference yesterday, were you not?

Dr. EDELSON. No.

Mr. BURTON. You were not there. Well, at the conference yesterday I showed a tape of a study that was done at the University of

42

Calgary in Canada that showed what happened to brain cells when

a very small amount of mercury was put in close proximity to

them. Of course, it did destroy them.

If you find out a child has had, say, from mercury, which they

think is one of the major culprits in their body, and they are suffering from autism, you can chelate that out of their body. In your experience, what about regeneration of the brain tissues? I have been

told that once that damage is done, you can’t do much about it.

Dr. EDELSON. That is not true, at an early age. Absolutely not.

We know that, at least up to 10 or 11, that you can completely turn

around what has happened to brain cells. A classic example is you

can take a 6-year-old, remove half their brain, within 2 years that

child will be perfectly normal. If you try it on a 15-year-old, you

have a totally disabled individual. The brain cells regenerate. They

take time to do it, but it completely heals.

If Mindi will show that videotape of a child, just a 2-minute videotape of a child, you will see a child before we removed the mercury from the body of the child and after. We will see the behavior

of this child.

Mr. BURTON. We will do that in just a second.

I would like to ask a question about that. Have you kept records

of all this that you can pass on to our health agencies? You know,

when I talk to our health agencies, there is a built-in reluctance

to believe that chelation, for instance, and things like you are talking about really do any good. They always want to do a doubleblind study, and that takes 5 or 10 years. By the time you get

through it, a whole generation of kids have been left behind.

Dr. EDELSON. That is the classic. What can I tell you?

Mr. BURTON. First of all, how do you get around some of our

health agencies and maybe some of the condemnation that doctors

receive for doing these procedures?

Dr. EDELSON. They can condemn me all they like. I am getting

children well, and I am willing to put up with their condemnation.

Mr. BURTON. And you kept records showing the improvement of

these children?

Dr. EDELSON. I have records on all of this.

Mr. BURTON. How many children have you helped?

Dr. EDELSON. Oh, gosh, 100.

Mr. BURTON. One hundred. Would you mind sending us any kind

of a medical record history?

Dr. EDELSON. I can’t do that, according to HEPA laws.

Mr. BURTON. See, the problem we have——

Dr. EDELSON. I didn’t make the laws.

Mr. BURTON. I know you didn’t. For me to change those laws is

a very cumbersome process, as you might realize. What I am trying

to figure out is how we can take the statistical data, if not the personal data of these kids, and give it to our health agencies as some

kind of a proof that this stuff works. Because I believe it does work.

Dr. EDELSON. There is no question.

Mr. BURTON. I know chelation has helped in other areas as well

with older people as far as their arteries and that sort of thing. So

is there any kind of information you could give us without divulging the names and records of these people that would show a child

in this age group had this kind of a problem and a child in this

43

age group after chelation and this sort of thing had this kind of a

behavioral improvement and educational improvement?

I know it would be difficult for you to do that. But if you could,

if you could send that to us, we could get that to them and at least

show them from your research, working with these kids, how that

has been beneficial. Maybe we could kick them in the rear end,

those who are reluctant to believe this sort of thing, that maybe

they should appropriate or spend some of that money we are putting over there to check this out.

Dr. EDELSON. It won’t work, but I will do it for you. I know by

experience that the lack of knowledge in this group that you are

talking about who are going to look at these results, they are going

to be putting it down before they are going to accept it. They are

going to put it down.

Mr. BURTON. Let me worry about that.

Dr. EDELSON. That is fine.

Mr. BURTON. Dr. van Dyck will tell you the general understanding over there is I am a real bad guy. That is pretty much it, isn’t

it?

You don’t have to answer that. I will tell you I will be very aggressive in asking them—very aggressive in asking them to review

your case studies without names or anything so we don’t violate

any laws or regulations and ask them to take a hard look at it. If

they won’t, I will call them before the committee and ask them why

they won’t.

We have all dealt with bureaucracy and sometimes you find a

real diamond up there that says, we ought to take a look at it, and

then you find some of the hardheads and we have to try to deal

with them. Would you get that for us?

Dr. EDELSON. Sure I will.

Mr. BURTON. Ms. Pettinati, you are Italian—I didn’t think you

are Irish with that name—or your husband is Italian.

Ms. PETTINATI. I am Irish.

Mr. BURTON. But your husband is Italian.

Ms. PETTINATI. Yes.

Mr. BURTON. Tell me how your children have improved since

they have gone through this treatment with Dr. Edelson.

Ms. PETTINATI. They are overall much healthier, not so many

problems as we previously saw. Socially, they have improved. My

son’s personality has just—I didn’t realize he had such a great personality.

Mr. BURTON. Was this immediate? How long did it take before

you started seeing this?

Ms. PETTINATI. For my son, I saw some improvements within a

month.

Mr. BURTON. How many treatments did he have in that month?

Ms. PETTINATI. The month, eight.

Mr. BURTON. Were these all chelation treatments?

Ms. PETTINATI. Yes, chelation.

Mr. BURTON. Do you do those a couple a week?

Ms. PETTINATI. Yes.

Mr. BURTON. You saw marked change.

Doctor, when you were chelating, did you note a drop in the

amount of toxic chemicals that were coming out of his body?

44

Dr. EDELSON. We measure the levels after about 3 or 4 months

of treatment, because it is an expensive test, so we don’t want to

do it prematurely. We don’t measure it every week.

Mr. BURTON. You started out, and after you do the original urinalysis without any chelating in it, you do the chelation and you

can see what it is, and then you test after about 3 or 4 months.

Dr. EDELSON. Three or 4 months. We tested again, and you can

see the drop.

Mr. BURTON. But in her particular case, her son started seeing

marked change in a month.

Dr. EDELSON. Well, it is more than chelation. She didn’t tell you

that the child also had about six different therapies in addition to

the chelation.

Mr. BURTON. Were those administered by you as well?

Dr. EDELSON. Yes. We are not doing a linear protocol here. It is

a multifaceted treatment protocol that deals with all of the abnormal biology, not just the heavy metals. Remember, I mentioned

that these children have multiple defects.

Mr. BURTON. Diet and everything else. I see. Well, your son is

doing better, and your daughter is not doing that well. How much

did you say you spent? $50,000?

Ms. PETTINATI. So far, $80,000. But I would do it all over again.

Mr. BURTON. No, no, I understand that. It has put a real financial burden on you and your husband.

Ms. PETTINATI. Absolutely.

Mr. BURTON. Well, you are one of a whole host of parents that

have had this kind of a problem. We have been working very hard

to get the Vaccine Injury Compensation Fund opened up so a Special Master can look at everybody’s case and make a decision that

will not be appealed up and up and up like they have been in the

past, so parents can get restitution or some compensation out of

the funds to help defer—not defer—but help deal with some of

these expenses so people don’t lose everything.

I don’t think we are going to ever find the whole solution to the

problem of these kids being damaged. What I am trying to do with

this committee is to find out what the cause is. We have looked at

the MMR vaccination, and we have looked at the mercury in the

vaccinations and so forth. The scientists we have had before the

committee from around the world believe that the mercury is one

of the major causes, the MMR shot is one of the causes, so what

we are trying to do is first identify the problem and then try to find

out how to deal with the problem and, if possible, how to cure the

problem. It is a very cumbersome problem.

I see you shaking your head there. It is not going to be easy.

Dr. EDELSON. It is because I don’t believe the MMR is the cause

of autism, and I think there are a number of studies this have

shown it isn’t.

Mr. BURTON. Look, I am not saying you have to agree with everything we are talking about here. We have had doctors from England who say yes and who say no, and all we think the health

agencies ought to do is check it out so we know.

As far as the mercury is concerned, those who have an open

mind, there is a universal belief that is a contributing factor.

45

Dr. EDELSON. Contributing, but I have had 30 percent of the children who do not have mercury, who have other metals and chemicals that are involved in this.

Mr. BURTON. Tell me about that.

Dr. EDELSON. Absolutely lead is a very, very big metal that we

find in these kids. Tin is also. These both——

Mr. BURTON. Aluminum?

Dr. EDELSON. They are all neurotoxins. Not too much. Occasionally, we find aluminum present. It is not one of the major ones. But

the three major neurotoxins are certainly mercury, lead and tin.

We also find a significant amount of nickel, which is an immune

disregulator as well, as is lead and mercury. So we have the immune system here being damaged as well as the central nervous

system.

Mr. BURTON. That is in your book.

Dr. EDELSON. The entire 9 years of my work, the three studies,

all the things about the mercury, it is all detailed in there.

Mr. BURTON. Well, I will try to go through this. But if you could

give us—as you might believe, we have a lot of other issues we are

working with up here, like the Medicare prescription drug benefit

and the war in Iraq and a few other things. What I would like to

do is ask you to give us a synopsis, if possible, condense some of

these major issues that you think we ought to deal with that we

can present to our health agencies so I can go through them more

rapidly. I know it asking a lot, because you have a lot on your

plate, too. If you could get that for us through Mindi and my chief

of staff and the other people, I would really appreciate it.

Dr. EDELSON. OK, sir.

Mr. BURTON. I see Mr. Rollens has arrived. I hope you gave a big

speech over there that everybody was listening to.

Mr. ROLLENS. It was presented in the great Dan Burton style, I

must say.

Mr. BURTON. I don’t know about that. In fact, I am afraid to ask

how you define the great Dan Burton style. Never mind.

Why don’t you make a statement, if you want to, Mr. Rollens?

Then we will get back to questioning. I don’t want to hold everybody up too long. Can you confine it to 5 minutes?

Mr. ROLLENS. Thank you, Mr. Burton, staff, members. It is a

privilege to be here before you.

Mr. BURTON. I didn’t swear you in. I swore everybody in.

[Witness sworn.]

Mr. ROLLENS. Mr. Chairman and members, it is a privilege to be

back before you again. I was invited before your committee back in

August 1999 and testified before you about the autism epidemic in

California and the growing concerns about the role of vaccines in

the process of development of autism.

Back in 1999 when I testified under oath, as well, I reported to

this committee that California was adding, on average, five new

children a day, 7 days a week, with professionally diagnosed, fullsyndrome autism.

I wish I had better news to report to you today, Mr. Chairman.

But today, in November 2003, a little over 4 years since the last

time I reported, it is no longer five new children a day, 7 days a

week; it is 11 new children a day, 7 days a week that we are addVerDate 11-MAY-2000 10:33 Apr 06, 2004 Jkt 000000 PO 00000 Frm 00049 Fmt 6633 Sfmt 6633 D:\DOCS\92727.TXT HGOVREF1 PsN: HGOVREF1
46

ing to California’s developmental services system. These are all

professionally diagnosed cases and at a cost to taxpayers of over $4

million for a lifetime of care for each child that we add to California’s developmental services system.

It doesn’t take a math wizard to figure out the math, that in our State we are adding $44 million worth of new children every day

to the cost of care for a lifetime of care for children with autism.

Just in the first 9 months alone this year, we added enough children with full-syndrome autism to incur over $1 billion worth of

taxpayer liability for the care of that population—California, one

State, 9 months, $1 billion.

The enormity of this problem is beyond comprehension. We are

not only seeing a rapid growth in autism, but we are seeing the

numbers of these children coming in at a rate that has just literally

doubled within the last 4 years.

The numbers I report to you, Mr. Chairman, are documented in

a report by the California Department of Developmental Services

that is available; and I will make copies available to you and your

staff and the other Members showing this rapid increase just in the

last 4 years.

The concern, of course, to State government and Federal Government is what are we going to do? How are we going to care for the

children that are here today at a cost over a lifetime of care, just

in providing shelter, food and programs for those people when they

become adults and young adolescents?

The age distribution in our State is astounding. We have—with

the other disabilities in California’s developmental services system,

which includes things like mental retardation, cerebral palsy and

epilepsy, you can chart out exactly what the numbers of new cases

are in a very predictable way. In fact, the folks in the Department

of Finance budget California’s over $2 billion budget for the developmental services system based on this very predictable rate of increase.

The autism numbers are just off the chart. Not only are they off

the chart, the age distribution in the population is so skewed toward young children it is astonishing. When you look at mental retardation, cerebral palsy and epilepsy, you can see there is roughly

the same number of those people with those disabilities at age 25

than those age 10 or 15 years old. But you look at the autism population and you quickly discern that only 15 percent of our autism

population are adults over the age of 25 years old. Another 15 percent are between the ages of 15 and 25 years old; and 70 percent,

7 out of 10, are children between the ages of 3 and 14 years old.

This is a sobering statistic and a real-life crisis as the tsunami of

children reach adolescence and adulthood.

We know one thing about autism for sure, and that is it affects

boys at a rate of at least four to one. The thought of thousands of

autistic males as young adults coming into our system who need

services such as in-home and residential—out-of-home residential

placement and care is an overwhelming thought.

We know in our State, for instance, the amount of money we

spend on children with autism is, on average, about $5,000 a year.

When those children become adults, it jumps to $30,000 a year. It

is a huge increase. We don’t spend—the money in autism services

47

is not with children, it is with adults. These are in today’s dollars

with today’s demands. Again, with only 15 percent of our population currently adults, what is going to happen when these thousands of new cases of growing numbers of cases of autism reach

that level? It is an unbelievable situation.

Back in 1999, your colleague, Diane Watson, who I had the privilege of serving with—I was the Secretary of the Senate for the

California Legislature for 24 years, and I refer to her as Senator

Watson because she was in the State Senate and the Chair of the

Health and Human Services Committee for many years. Senator

Watson, now Congresswoman Watson, was the author of the legislation that created the MIND Institute. So this is a special day for

me, and I hope—I know how busy she is with votes and all that,

but I do plan to stop by and see her. I am privileged to be before

your committee for that reason as well.

In 1999, the MIND Institute was created. It was created by four

fathers of children with autism. We secured through our efforts

over $80 million of funding from the State of California over those

years to create what has become the largest autism research clinic

and education program in the country, within 3 years.

We had our grand opening of the building, a 150,000 square foot

complex located in Sacramento, and I invite you, Mr. Chairman,

and your committee to please come to Sacramento and have a hearing and let us explain and show you firsthand the exciting work

we are doing, not only in the traditional autism research but some

very progressive areas of research looking at things like the role of

mercury, the role of MMR vaccine, the role of other neurotoxic components of vaccines in the development of autism.

Mr. BURTON. Well, let me interrupt you here, because I want to

get to questions. We kept everybody here longer than I anticipated

today.

Has the MIND Institute come to any conclusions about this tremendous increase in autistic cases out there?

Mr. ROLLENS. Yes, they have. They absolutely believe the increase is real.

Mr. BURTON. I mean, do they have any causation conclusions?

Mr. ROLLENS. Not quite yet, but, as they say in the news business, film at 11. We expect to have some results published within

the next few months on some of these very important questions.

Mr. BURTON. You have doctors and scientists that are looking

into this out there to come up with some conclusions that they

think have some scientific validity?

Mr. ROLLENS. Absolutely. The MIND Institute is all about good

science research not only in clinical research but in biomedical research, and the work that is being done is first class, it is publishable, and it will be published in not only mainstream medical journals but the best mainstream medical journals.

Mr. BURTON. In addition to the research out there, are they

doing anything like Dr. Edelson is doing as far as using alternative

methods of treatment to help kids?

Mr. ROLLENS. One of the——

Mr. BURTON. Dr. Edelson has used chelation and other treatments which has been beneficial to a lot of children. What do they

do at the MIND Institute?

48

Mr. ROLLENS. One of the dilemmas that we have that we are addressing by doing good science clinical research is finding the efficacy of many of these interventions that we as parents have all

tried, and there are many dozens of different interventions out

there in the community, some of which have a positive effect. I am

a living, breathing example of my son’s progress that he has made

on many of these types of interventions, including chelation, I can

speak as a parent, has been helpful.

But the problem we are having, of course, is unless parents dig

deep into their pocket, sometimes into the hundreds of thousands,

$80,000, $60,000 a shot, to go to folks for these kinds of services—

we need insurance companies, we need regional centers, we need

school districts, we need all of the folks that are responsible for

paying for these interventions to have the science behind the particular intervention in order to get the funding so parents are not

on the hook and in many cases literally left destitute by having to

pay for these procedures.

Mr. BURTON. What we would like to do—and as long as I am

chairman we are going to keep digging into this and trying to get

our health agencies to work with these research facilities around

the country to come up with some positive responses to it. What

we would like to do is—I would like to have your pamphlet there.

If there is any additional information you could give to us, we

would like to have that as well.

Mr. ROLLENS. In here I do outline and the MIND Institute outlines all the autism vaccine studies so you can see what is in

progress.

Mr. BURTON. What we would like to have from Ms. Schwartz is

your recommendations on expanding the educational programs for

the people in the educational profession so they will know better

how to deal with these kids and what we ought to be doing as a

government to provide the resources to help those educators to be

trained properly.

From you, we need—you know what we need. I know you can’t

violate, Dr. Edelson, the rules and regulations and laws established

to protect patient confidentiality. But, as I said before, if you could

give it to us in some kind of form so we can take a hard look at

it; and maybe after that we can get some of our health agencies

to sit down with you and maybe take a closer look at case studies

within the confines of the law.

All I can say to you is I am very sympathetic, Ms. Pettinati, because we have gone through it, and sitting in the audience I think

are a lot of parents and people who have spent all that money and

toward that end we are going to continue to try to do something

about the Vaccine Injury Compensation Program. We continue to

need everybody’s help putting pressure on Congressmen and Senators to push for some changes in that program so we can get some

money to the parents so they don’t go bankrupt and then they can

use that money to help get their kids better by going to facilities

like Dr. Edelson’s and others.

Ms. Watson has requested that her statement be submitted for

the record. She could not make it. We will do that. I will tell her,

Mr. Rollens, that you still love her dearly and you missed her

today.

49

With that, unless there are any other questions I might ask, if

you could get us that information, we would really appreciate it.

We will not just let it lay around here. We will use it, I promise

you.

Mr. ROLLENS. Please come to California.

Mr. BURTON. I am going to come to California. Representative

Watson and I are going to have a hearing on amalgams and mercury in California. We will try to make it in Sacramento if possible

so we can go up there and see your facility and try to get a look

at that.

If you folks will get us that information, we will take it and run

with it. Dr. van Dyck, I hope you will carry back to our health

agencies the message that you have heard today; and we need to

continue to work with you to find some solutions.

With that, we stand adjourned.

[Whereupon, at 4:08 p.m., the subcommittee was adjourned.]

[The prepared statement of Hon. Diane E. Watson and additional

information submitted for the hearing record follow:]

50

51

52

53

54

55

56

57

58

59

60

61

62

63

64

65

66

67

68

Æ